At age 23/24, while I was going thru a very stressful and scary event, I had
my first notable MS symptoms. Didn't know it at the time and not bad enough
to seek a Doc, I just rode it out. Had some scarier symptoms in my late 20s to
early 30s, got married at 29, had a Child at 30 and still no Doc.

At 34/35, had my first MS exacerbation and ran to the Docs. After a bunch of
probing and treatments, Doc sent me to a Neuro and he put me in the hospital
for a week of tests. After a myleogram/spinal, the MS DX came. I suspected
and was ready for it...sorta...

I had many symptoms over the next 17 years, but really had MS Lite, until my
2nd mega exacerbation at age 53. that was the end of the beginning or the
beginning of the end? Went thru several Attacks & Meds over the next ten
years and then at about age 64, strolled over the bridge to spms..
Stopped all of the usual DMDs and started LDN.. Joined here in 2006.

And here I am at 75 yrs young, none the worse for wear, 50 years after my
1st SX, 40 yrs after my DX, still going strong, although doing most of my
traveling in my scooter. I intend to see, at least. age 90,(God willing)

I'd love to hear/see your stories, if you have one.
Please post it here! Thanks!

Nice story and to the point and short.

Unfortunately I tend to get emo doing 'my story' and can get quite long.

I'm currently writing a blog about my ms story, lol....wish it were finished, but I guess I could come up with a short version for now.

Thanks!

Yes, my short version. I've blessed you all with my biotches and pains
over the years, so left out the gory details.. That doesn't mean
that you newbies have to do that.

Well, mine has fewer twists and turns than yours Sally, but I seem to be incapable of telling it succinctly. So with that said, here it is for what it is worth:

In June 2004, at the age of 34, I had been working at a new job for about 3 months. After two years of helping two of my brother-in-laws ride in an MS150 bike ride (San Antonio to Corpus Christi, Texas), I had decided that I was going to ride as well. I signed up for a gym membership to start exercising again, with plans to start riding my bike again and training for the ride. The gym offered an "orientation session" to introduce you to the gym and help you set goals and plan to reach them.

On the day I was supposed to go to the gym for that orientation and start on my path to riding the MS150, I was sitting at my desk around 9:30 am and suddenly lost all the hearing in my left ear. Over the course of about 5 seconds, it was just gone. Imagine the feeling when you are going up or down in an aircraft, and your ears pop. That is what it felt like. I spent a few minutes trying to "unpop" my ears before realizing that wasn't it. I then took a quick trip across the street to a drug store to get some Qtips so I could clear out whatever was plugging my ear. That wasn't it either.

So I called my PCP. Surprisingly, they had room to see me that afternoon. So I went in to see him. He checked me over and when he tried to use a tuning fork to test my hearing a number of different ways, he was surprised to realize that I truly had no hearing at all in my left ear. It wasn't just lack of sound getting through, there was no nerve sensation coming from my inner ear. He left briefly, then came back and told me to go see an ENT...gave me their card and address...and said "don't bother calling them, just go. They are expecting you." That is when I knew something strange was going on.

The ENT was pretty puzzled. I had over 90 dB of loss in all frequencies in my left ear...what would be called "profound" hearing loss. I didn't have vertigo like they would expect with Meniere's disease. I didn't have signs of viral or sinus issues. So they sent me for an MRI and put me on oral steroids. I went for the MRI, and by the afternoon of the 2nd day, I hadn't heard anything from my PCP or my ENT. So I started calling both offices looking for results. Normally they would have already called and said "everything was fine"...but they hadn't.

That night, around 7-8pm, both docs called me back...both had the same message...there are abnormal spots in your brain. They could be nothing, or they could be a demyelinating disease such as MS. They sent me to a neuro who wanted a spinal tap. The spinal tap was negative for oligoclonal bands. By then, I was nearly 8 weeks out from the initial hearing loss and the hearing was starting to slowly return. The end result from the ENT was a diagnosis of "Ideopathic Sudden Neurosensory Hearing Loss". Which is fancy doctor speak for you lost your hearing and we don't have a clue what the cause was.

The neurologist was more descriptive but similarly non-committal. She told me that I had spots that were suggestive of MS. BUT...there were not enough spots or not enough in the right places to cause her to call it MS. At the time, I understood what she was saying to mean "I don't know what you have, but based on your MRI, I don't think it is MS". Today, I understand that what she was really saying was "I think you have MS, but your MRI doesn't show enough lesions or the right kinds of lesions to allow me to give you an MS dx under the McDonald Criteria".

By this time, I had missed enough training and working out time that I didn't ride the MS150 that year. I once again helped my in-laws and their team of riders. I did start going to the gym and exercising. In May 2005, I got out and started riding my bike. My first "training ride" was 4 miles around the neighborhood. Over the course of the next few months, I worked my way up to a long ride of a little over 50 miles in one day and ditched my 15 year old mountain bike in favor of a used road bike.

I rode the MS150 in October 2005 and it was brutal. The temperature was 95-100F and the heat index was 105-110F. We also had about a 10-15 mph headwind to fight against. I made it about 67 miles out of 90 on day one before I had to quit. I made all 62 of the miles on day 2 in similar conditions. At one point, I remember laying in a small patch of shade at a break point about 50 miles in and looking up at the cloudless sky. There were about 15 vultures circling over us, and I found myself wondering if they thought we weren't going to make it or if we just smelled that bad?

In 2005, I had an annual MRI to check on my condition. Nothing had changed and I felt fine. In 2006, I got an earlier start on my training, did a better job increasing my mileage, and had the joy of my wife joining me in training for and completing the entire MS150 ride from wire to wire that year in much nicer conditions. I felt great, had no further symptoms, and the annual MRI requested by my neurologist was almost an afterthought. I did the MRI as part of my annual physical and the written report said something like "No changes to the hyperintensities in the white matter of the brain." So I almost didn't even go to the neurologist. I mean why bother? I felt fine, there was no change to my MRI...

But I did go. On the day I was turning in the last money I had raised in the MS150 to the MS Society, I stopped by the neurologist's office for a quick visit. She took a look at the scans on the CD and came back into the room saying "I guess a picture really is worth a thousand words isn't it?" I looked up at her wondering what she was talking about, and then she told me I had MS. The rest of the conversation is mostly a blur now (as is about the next week of my life), but I do remember that she told me that the radiologist was correct about no changes in the respect that I still had spots in my brain...but now instead of 2, I had 7, and that was enough to allow her to Dx me with MS.

I started on Copaxone and went on with my life. But without really thinking about it, I started changing the way I thought about the future. I started thinking things to myself like "Is going to graduate school really a good idea, when I might not be able to work much longer?" or "If I really want to do a trip to hike in XX country, I probably ought to do it soon while I can still walk ok."

I was subtly taking in all the things I had read about MS online and assuming they would all happen to me sooner rather than later. It was a tough period in my life, but somebody online gave some great advice, and I am ashamed that I can't remember who it was. They deserve credit for it, so whoever it was, stand up and take a bow. They said "You have to live your life, not your disease." I took that to heart ever since then, and stopped worrying about when or what MS might take away from me.

I do have to admit that it has been easier for me to do that than it would probably be for others, since my MS has given me no overt flares and little in the way of physical difficulties since that first episode of hearing loss. My hearing never really fully recovered and I have trouble hearing conversations in noisy places. I had to stop riding the San Antonio to Corpus Christi MS150 and start doing the Houston to Austin MS150 because it allowed me to train in the late winter and spring instead of through the summer months. That was due to the heat just zapping my energy levels when I would ride. But otherwise, I have been remarkably lucky in how little my disease has progressed in terms of outward symptoms. I have a lot of cognitive issues that have gotten worse over time, but how much is MS and how much is getting older, I have no way of knowing.

So from 2006 to 2009, I was on Copaxone, doing fine, feeling stronger and stronger on the bike. Even though I was gaining weight, I was in better shape and felt better when I rode each year. So imagine my surprise in 2009 when I almost skipped my MRI. I thought "I feel great, why do I even need to do this?" Finally, the neuro's office called and asked me to schedule it, so I did. I went in expecting to hear the usual "You look fantastic...I would never guess you have MS just from looking at you!".

But I didn't. She brought me into her office and showed me the scans from 2008 and 2009 side by side, and my lesion count had doubled. Even with no flares or obvious new symptoms, my MS was still there. So I switched to Rebif, and have been on it ever since. United Health Care made two attempts to force me off of the Rebif and onto something else strictly to save themselves some money, but my doctors stood their ground and kept me on it. Special thanks go to the folks at EMD Serono and MS Lifelines for stepping in with their copay assistance program when United Healthcare decided to raise my copay to over $900/month.

Today, I find myself in an odd place. Over the last year, I have lost about 70 pounds and avoided becoming a diabetic. I have been taken off of one blood pressure medicine and had the dose of another cut in half. I am WAY faster on my bike and am probably in better shape than I have been at any time since college over 20 years ago. I just bought a new bike and picked it up two days ago to celebrate my weight loss. I just finished taking a Spinning instructor certification class and have started teaching Spinning classes after work at my gym.

So that is my story for now. I look back and shake my head at the vast difference between the picture my mind painted for me in 2006 of where my life might go in the next 10 years versus what it has become in reality. In April, I will ride in my 11th MS150, and in August my wife and I will celebrate our 20th wedding anniversary. If there is anything that causes me concern today, it is that every time I have felt this good in the last ten years, MS has found a way to remind me it is still with me. I will have another MRI on Friday morning...wish me luck!

Hi Sally, I don't think I have ever read your story before. Thanks for sharing it

In the spring of 1985, at the age of 24:

My husband (married 1981) was out of town on business. When my husband was out of town, which was quite often, I took care of all the yard work. Early one morning I hauled out the lawn mower and preceded to mow (keep in mind this was not the first time I had mowed but, was the first mowing of the season).

Normally I would cut both front and back at one time.

On this day I started in the back. About half way through the back my legs started to get weak, numb and pins/needles. I kept going but it got worse so I shut the mower off and went in the house.

Since the weakness, numbness and pins/needles continued I never made it back out that day. I woke up the next morning and felt fine so I went back to mowing. I couldn't even finish the last half of the backyard. My legs got weak, numb with pins/needles again. I had a hard time getting back to the house.

I never did finish the mowing.

The pins/needles, numbness and leg weakness did not go away this time and more symptoms were starting to pop up. I developed hand tremors, really bad fatigue, and the one that scared the poo out of me, Lhermittes.

I remember explaining to my husband how each time I bent my head down I had odd sensations from my waist down. His response? Stop looking down!

I made an appointment with my PCP. He listened to me, did an exam and said he would be back in a minute. He comes back in and says, I can't help you and handed me a referral to a Neurologist I had never heard of a Neurologist and didn't understand what this could mean (there was no internet at that time).

The Neurologist ordered x-rays, blood work, Myleogram, lumbar puncture, brain MRI and VEP. When I had the LP the Dr. showed me the spinal fluid and said, do you see how cloudy it is? This means there is something going on I had the Myleogram right after the LP and I scared everyone In the room. Apparently I turned as white as the towels, I thought I was going to pass out.

At my follow up appointment I was diagnosed with Multiple Sclerosis. When I was told I said, okay. How do we fix it? I was then told there was no cure and no medications. He did prescribe Prednisone for the exacerbation.

Complete and total shock set in. I had been married 4 years at this point and I was "only" 24. I did tell my husband I would understand if he wanted out of the marriage. He got angry and said he had no intention of leaving. We are still married (almost 34 years).

Over time I came to understand that I have had MS since childhood.

It took me almost a year to recover from that exacerbation and at about that one year mark, in the summer of 1986, I had my second exacerbation. We had our first child in 1989 and our 2nd in 1992. I went on to have 3 more exacerbations, 1994, 2001, 2002. In May 2013 I was diagnosed Secondary Progressive.

Thanks TX and Snoopy for adding your stories. I found them both great reading.
Thanks so much for sharing.

Next please.......

Thanks for sharing your story Sally. I hope I can keep mine fairly short and sweet.

I certainly knew something was wrong when I was just a child, it made me quite the dare-devil, and gave me a thirst to experience everything. As a kid I certainly didn't "know" exactly what was wrong but knew there was something. I met my husband when I was 14, entered a relationship after my 17th birthday. And then he spent the next 5 years convincing me to marry him.

23 I think was the first that my old PCP starting thinking something was unusual, I had walked the three or so miles to the store my mom worked at, spent the evening helping her out and visiting (insomniac hyperactive night owl) left around 4 in the morning and had a glorious 'superman' fall out of no where. Tore up my knees and hands pretty bad, though I still finished the walk home.

But it really baffled the doctors 2 years later when my back simply broke. 25 years of age, no major accidents or falls, no history of back pain. Was in a seated position at the time of the 'snap' but my job wasn't strickly sitting all night. At the time I didn't have insurance and ga doesn't have temporary disability. So I was left saving up what I could to get tests and such done.

ACLs tore, then the tendonsis, then the MCLs... My body was ripping itself apart as I lived on ramen noodles trying to scrounge up enough money to pay for the next test, the next doctor appt, the next pt visit. And odd as it is to say I was suicidal but never really depressed.

I had my whole life to prepare for the worse, felt I had spent my time well, I trained horses, worked as a riding instructor, wrote short stories, did bare-face rock climbing, ran track and field, played pretty much every sport known to (American) man and then some, could play half a dozen musical instruments, slept through college course and got A's. It was a good life, just a bad body and many a time I was ready to pull the trigger and enjoy the next life.

But I'm probably the tiny minority of people whom Obama care helped. As soon as enrollment for it opened, I signed up. With health insurance I was able to see the doctors, get all my tests done without pinching every remaining penny. And August 11,2014, after ten years of doctors finally noticing something was seriously wrong, I got my diagnosis.

My meds no longer have to stay in front of the knife block. I used to keep them there because when the pain was bad enough I was sorely tempted to grab one or two and slice open my femeral arteries, but if the pills were there I could take one of those first. I started on copaxone soon after my diagnosis, changed out all of my pain medications. And unfortunately have gotten worse lately. But things were much better for a time so I still intend to get back on track.

My husband and I don't have any children together, he had a vasectomy that we tried unsuccessfully to reverse (even more devastating to me than the !S diagnosis) but I do have two step-children, and now 2 beautiful and precious grandbabies.

I have a strong desire to travel, and can't wait until everything calms down a bit more financially for us so I can begin globetrotting . I'll get to be the spoiled American playing on a scooter around the Eiffel Tower.

Thanks for the thread Sally. Several of us have been on this journey together for a long time. We just didn't know how we got on this train.

I'll start out like Starz did. I knew something was wrong when I was just a child but found out it was only that my Mom gave me baby brothers!!!!

OK, I promise to be nice. I was out shopping in 1997, age 47, and noticed that my right leg wouldn't cooperate as well as the left when getting in the car. We finished shopping and went home. I was tired so I sat in the recliner, pulled the foot rest up and rested. But I found I couldn't move my foot or leg at all. Now being a nurse I should have been alarmed at that. But I knew I had several bulging disks and since I was a nurse used to diagnosing myself, and not knowing orthopedic or neurology very well I just said it was the bulging disk.

The next day everything was the same so I knew that something was really wrong but I didn't have nice gowns and underwear to wear to the hospital. So I went out to buy it. So by then my left leg wouldn't cooperate very well. I could slowly walk but if I as laying or sitting down the legs or feet had nothing. So I went home with my new stuff that was befitting a preacher's kid to wear in the hospital and did I call the doctor???? No, not yet. I had to take a bath, wash my hair and shave my legs. I knew I couldn't shave my legs to easily if I had back surgery so better do it now. So I finally called the doctor and was told to immediately get to the hospital, and to have some one drive me. So I called up my parents, who didn't even know anything was happening, packed my new belongings and went to the hospital.

I had a spinal and brain MRI the next day and played the waiting game. I walked down to my unit to see what they were up to and waited. At about 11 PM that night the neurosurgeon who was going to do surgery if my bulging disc had herniated came in and asked if I wanted the good or bad news first. I said good news. Joyce, you don't have a herniated disc. Bad news, you have MS. Then he left. Nothing more said! This was back in 1997, and the neurology unit's neurology books all were so outdated. I read all about the nurses job in MS was preventive care to take care of bed sores, pneumonia for aspirating, etc. Scared half out of my mind. To late to call my husband, didn't leave a sleeping pill for me. So the neurologist saw me the next day, ordered many more MRIs, EMG, everything. So after it was all over she confirmed the diagnosis. So I had one lesion involving all of the pons which all the nerves in the brain travel through to get to the spinal cord. Nice place to have one. Not.

I had an injection of acthar gel as soon as I had got to the hospital to reduce swelling so the symptoms were already improving but when I saw my neuro, I'll call her Carla, she ordered my first course of the IVSM. Quite a shock to have that first course of it.

Years later I had a short time of optic neuritis which made Carla to change the diagnosis from clinically propable to RRMS. I still just have the one lesion and have MRIs only when needed. I am left with cognitive difficulties, fatigue, pins and needles in feet and legs, some bowel and bladder issues.

But it was when she told me that the trigeminal neuralgia that I had already been diagnosed with back in 1992 that I had propably had MS since then. But then I though of all the vacations I took, all the work I did and I did it with no problems that I could do this MS thing. Sure I had to watch doing stuff in the heat but I could go on and not let this thing scare me.

I worked full time for over 2 years after my diagnosis and then had a big exacerbation mainly my legs again, took 2 rounds of the IVSM and then two rounds of the follow up prednisone to get it back to it's base line that I knew I had to quit work.

Just like the Batman, losing weight and getting back in better physical shape has done so much to make me a much healthier person and tolerate this much better.

I still count having MS as one of the greatest blessings that God has given me. It was the slap in the face that I needed to make me prioritize things in life a bit differently. Nursing was always first and then far down on the list were my family, God, church. My youngest was just graduating from high school and we were empty nesters so I was 'just a house wife'. But I was able to see where I had some things really messed up in life. I ca easily say it was and is a blessing because my MS isn't that bad. I can still walk fine, do mega shopping, go on vacations if I use a scooter on vacation. I stayed with my daughter a full week when she had both of my grand children. If I had been working I couldn't do that. I have been able to many things in life because I am at home now.

thanks for this thread sally. it's a heartfelt way to get to know each other's stories. here's mine,

i graduated nursing school in '71 in miami. i did several types of critical care and finally settled in NICU (neonatal intensive care unit). i moved to denver, co and was working 12 hr shifts. i began to notice my gait changing and every few seconds felt an electrical kind of whooshing in my left leg. it drove me crazy and i never could explain it to my drs better than that. i was 53 y/o.

my pcp did an exam and sent me to a neuro. i had an mri. they found 6 brain lesions and 2 in my upper spine. i had 2 O-bands in my spinal fluid. i knew an MS dx was possible and was mentally preparing for it, or so i thought. when i was given the dx it was still a shock, it was 2003.

working was becoming very, very difficult. walking up and down the halls for 12 hrs was exhausting. and i was caring for sick babies of which many were under open warmers. i was very heat intolerant and it was debilitating. one day i went down to the cafeteria for lunch and to cool off. i could hardly walk. i sat at the table and started sobbing. i was scared.

i thought if i went part time i could prolong my work life (and so i also gave up my long term disability). i was wrong. when my cognition wasn't as sharp as i needed it to be to work i knew it was the end. i spent 18 yrs at that position and was an RN for a total of 35 yrs. i was devastated. when i cleared out my locker and left that hosp for the last time i really grieved for my loss.

let me speed ahead. i was on copaxone for a total of 11 yrs. then stopped. thank God my MS course has been fairly stable. i have never had an exacerbation. i have some cognition problems, i can walk with a cane and i can drive. thank goodness my strong leg is my Rt leg. my Lt leg is weak.

i was dx'd with breast CA in '08 and had bilateral lumpectomies. thank goodness i've been CA free since then. i have a lot to thank God for. i moved to st. augustine, fl to retire with friends. that was '10. however, have had C4 surgery, then bilateral cataract surg, hand surg for trigger fingers and now last yr had L4 surg. i have more strength in my bad leg. it turned out that some of the problems with my leg were coming from my back and not the MS.

yesterday i had an attempt to remove and IVC filter put in during that surg which was unsuccessful. i fervently hope the rest of this yr i will be healthy.
i need to control my diabetes and lose wt. then i could be off half my meds and maybe even the insulin. that's my goal for this yr.

i've found that making a plan of action has helped me best. break things down. take one thing and day at a time. i feel i have more control that way.
a friend by your side doesn't hurt either. i'm also thankful for all of you.

Thanks, Sal Pal, for beginning this thread! It is so helpful to read others' stories.

I'd had heat sensitivity since I was a teen, and a dx of fibromyalgia when I was 31 after several years of dealing with pain and severe fatigue (an orthopedist who was treating my knees later told me he and his colleagues were seeing patients move from fibro to MS...I thought, what's MS?).

The first sx that brought me to the doc was a sleeping big toe. Huh...sent me for an EMG, which showed problems with nerve conduction in the right leg. Was referred to a neurologist.

Had an MRI, EVP and LP. The MRI showed several lesions, EVP was neg, LP was clear. The neuro, who was attempting to narrow his practice to migraine sufferers, told me he believed that the numb toe was from long nerve neuropathy, and the lesions were from migraines. I told him I'd never experienced a migraine before. "Sure you have, you just didn't know it."

So he put me on a migraine med, which gave me such severe headaches I wanted to cut my head off. I told him I would NOT take it any longer. Later that year he opted out of my insurance company, so I found another neuro--thank God...

He told me my lesions weren't in the right place for MS, but he'd watch me. A year later my left leg went into a severe spasm that locked my leg for a short time. I also had new sxs, such as cog fog and bladder/bowel problems. He did another MRI, and there were a few more lesions, still not in the right place, but dxd me with MS. He put me on MONTHLY infusions of IVSM and Copaxone, then had me see his PA, who during every office visit pooh-poohed every new sx I had.

I had heard of a neuro one hour away that specialized in MS (the current neuro was a stroke specialist). He sat with DH & me for an hour and looked over the MRI. Said even though the lesions weren't in the "right place" there is still ample evidence, based on increasing sxs, to call it MS, although mild.

He has been excellent at symptom management. He is conservative with steroid treatment, and was appalled by the previous neuro's overuse. He has taken me off of Copaxone after I experienced severe lipoatrophy, which is actually worsening.
I'm currently on no DMD, and he told me last month that two lesions have actually disappeared. My sxs are a bit worse, but I can still get around, love the grand babies, and live a wonderful life with my adorable DH. Life doesn't get any better!